Medicines optimisation in long-term pain.

‘#jargonbuster‘Medicines Optimisation’ means getting the medicines right for the individual. This may involve an alternative medicine, an alternative treatment or approach, and / or not taking medicines. The person’s experience, beliefs and what matters to them most should drive this decision, with clinicians providing guidance, advice and education on trusted sources of information, the evidence base and on safety’. (Steve Turner)

Patient safety incidents relating to the unsafe doses of opiates remain a major concern. People develop a ‘tolerance’ to opiate medicines, meaning that higher and higher doses may be needed to deliver the same effect. However this tolerance rapidly goes away when the opiates are stopped, so restarting at the old dose may be fatal.

‘A review of medicines-related safety incidents involving controlled drugs reported to the NRLS over 7 years found the risk of death with controlled drug incidents was significantly greater than with medication incidents generally (odds ratio 1.48, 95% CI 1.02 to 2.17). Incidents involving overdose of controlled drugs accounted for 89 (70%) of the 128 incidents reporting death or severe harm. Five controlled drugs (morphine, diamorphine, fentanyl, midazolam and oxycodone) were responsible for 113 (88%) of these 128 incidents.’

Non-opioid medicines in long-term pain

Patients can be prescribed gabapentin or pregabalin for certain types of pain. Both of these medicines can lead to dependence and may be misused or diverted.

#jargonbuster ‘diverted’ = passed on or sold one to someone else.

Finally, emotional influences are real:

When assessing pain with someone it’s vital that clinicians take all aspects of the person’s life into account, including lifestyle, nutrition, hydration, social and housing factors, safeguarding, sleep and rest, other illnesses, emotional influences and their mental health.

And take a full history of medicines being taken, or recently stopped, including over the counter medicines, internet bought medicines, borrowed medicines and illicit substances.

People ask me ‘what exactly do you do for a living?’. Because I’ve been around a bit I sometimes struggle to answer this concisely, so here’s a short summary:

My career and experience:

After ten years of traveling around the world, I began my career as a nurse eventually specialising in mental health. My appetite for learning took me through a degree in Social Policy and then into the world of healthcare I.T.

I spent the next decade working on clinical systems for American giant Shared Medical Systems, progressing from project manager to Senior Strategic Services Consultant of the US arm of the company, working with leaders of clinical teams in the NHS.

I then returned to work for the NHS, successfully revamping the Information and Technology department at an NHS Trust prior to a trust merger.

A spell in consultancy for a large Cancer Network followed, by leading two multi-organisational projects to identify the most effective information and prescribing systems. These brought clinical teams together to manage a complicated buying system in a much more efficient and cost effective way.

I am a NICE Medicines and Prescribing Centre Associate, sharing related information /guidance & learning with a diverse group of NICE Affiliates, and documenting outcomes. I also continue to practice as a mental health clinician, focusing on several areas including mental capacity assessments and medicines management.

Turn Up The Volume! 2 London 26th May 2017 – A Reflection on the event

Summary:

Two years ago, Steve Turner, Managing Director of Care Right Now CIC, launched the first Turn Up The Volume! Conference in Bristol inviting patients, carers, NHS and social care staff to come together for the first time to discuss the problems within the NHS.

‘It was billed as a patient safety event like no other,’ said Mr Turner, ‘and it certainly lived up to its promise. There were many emotional moments as people told their stories to a sympathetic audience. The aim was to share experiences in promoting patient safety as well as helping people to speak out safely about bad practice and bullying.’

Turn Up the Volume 2 aimed to take the conversation further, make more links and help bring about actions which make a difference.

This was a ‘bootstrap’ event, which was put together by people who care about the subject, many of whom gave up their own time to be involved. It was open to anyone with an interest in the subject.

Forty people attended the event, from all parts of the UK and beyond. Delegates were from a variety of backgrounds including health & care staff, patient and public whistleblowers and academics.

The event was organised with the support of Marianna Fotaki is Professor of Business Ethics at Warwick Business School, University of Warwick.

Feedback from the event, which is still coming in, is largely positive and all constructive. As a result resources are being added to the event web pages, and an action plan is being developed. This will be openly shared with all delegates and through the www.tutv.org.uk web pages and on twitter under the hashtag #tutvlondon .

Aims of the event:

To provide a safe space where all involved can listen and learn from each other.

Giving food for thought and ongoing reflection.

Providing an interactive and inclusive listening exercise, where we plan to help everyone use the experiences of all those affected by cultures of fear to drive forward real change.

Throughout the day emphasis was placed on be on transforming ideas into action, and moving beyond stereotypes.

Speakers and delegates:

The morning session was chaired by Colin Leys, emeritus professor of political studies at Queen’s University, Kingston, Canada, and an honorary research professor at Goldsmiths, University of London. He is co-chair of the executive management team of the Centre for Health and the Public Interest (CHPI).

In the morning we heard from Dr Alexis Bushnell, who is a Research Fellow on an ESRC Transformative Grant, examining post-disclosure survival strategies by organisational whistleblowers (with Dr. Kate Kenny and Professor Marianna Fotaki). Then from Tracy Boylin, Human Resource professional and whistleblower, who spoke on ‘How can we use this event to make a difference?, and outlined some of the NHS initiatives that are underway.

Following this we heard from inspirational nurse Joan Pons Laplana, who spoke on Whistleblower experience and survival. Joan tweets as @RoaringNurse and has 27.5K followers. He spoke of the support he needed to keep going and in particular how he was welcomed into the BME community and found support there.

This was preceded by a short outline by Steve Turner of what happened when concerns were listened to. He gave an example of a project which came about because concerns were raised and, thanks to an open leadership approach, resulted in long term (and measurable) patient safety improvements.

There followed an interesting and powerful discussion on the current culture, where many of the delegates expressed their concerns that it remains unsafe to speak out at the moment. This included reservations and serious concerns about the effect of the Freedom to Speak Up Guardian initiative.

The final talk for the morning was given by a current whistleblower, who wishes to remain anonymous, who outlined their current situation and the background to it. This was a disturbing story which paints a picture familiar to many whistleblowers, where patient safety concerns are turned into an employment issue and the focus is distorted in a complex web of bureaucracy, obfuscation and accusations.

The afternoon session was chaired by Fergus Walsh, BBC Medical Correspondent. Our guest speaker was Steve Bolsin, the man who blew the whistle on failings in paediatric heart surgery at Bristol Royal Infirmary. This led to the Kennedy inquiry, which vindicated his concerns and was a landmark in clinical governance. He subsequently found it impossible to find another position in the UK and moved to Australia, where he became director of critical care services at Geelong Hospital in Victoria, achieving world class outcomes with the adult cardiac anaesthetic service he started. He has honorary professorial positions at Monash and Melbourne Universities.

Steve gave an account of the events in Bristol which even today, nearly 30 years later, was a poignant reminder of what happens when people try to speak up and blow the whistle and a club culture closes ranks to protect themselves and their organisations. This led to a powerful group discussion and questions to and from the panel, and highlighted ongoing concerns.

The event concluded with a session on action planning, collecting ideas and keeping up the momentum.

Dr Steve Bolsin speaking at TUTV! 2 London

Next steps:

One of the main areas of feedback is that these type of events enable people to get together who normally never meet, and that the strength of this networking, and the non-hierarchical approach adopted, will help in delivering a just culture in health & care.

Specific actions proposed included:

Building links with academic institutions and existing research projects

Linking with the BME community and leaders, who suffer disproportionately as whistleblowers and were under represented at the London conference.

Building links with whistleblowing organisations

Setting up action learning projects e.g:

To find out more about all costs of victimisation of whistleblowers, (legal fees, settlement agreements, ‘garden leave’ etc…).

Looking at the effect on relatives of whistleblowers

Looking at whistleblowing in remote and rural areas

Introducing more visual displays such as one shown at the event the ‘cost of bullying in the NHS’ and using the hashtag #tutvlondon

Cost of bullying in the NHS display (figures for 7 hours) based on ACAS figures and the NHS staff survey

Promoting the Turn Up the Volume! model of engagement in England and beyond

Organiser’s comments:

‘The Turn Up event went well. I believe that together we moved things on a little. The event linked together more great people and academic institutions, and came up with some actions.

My aspiration for the movement is to demonstrate how (or if) this approach to ‘engagement’ events works. The main characteristics being that it’s open to all, non-hierarchical and aims to look at things from all angles.

My personal goal is to be able to return to the clinical work I nearly lost when I tried to raise concerns and was bullied. I was very lucky due to my unusual career, and my experience of both clinical work, troubleshooting and senor management. Many people aren’t so lucky and their continued exclusion is great loss to the NHS and Social Care. Not to mention the personal suffering and the failures to keep patients safe, which is why all genuine whistleblowers put their heads over the parapet in the first place.’

Resources:

Updates will be posted on the www.tutv.org.uk pages over the next few weeks.

Multi-morbidity and polypharmacy (that’s taking four or more medicines)

People with multiple illnesses are often prescribed multiple medicines, with new medicines being added to counter side-effects of others. The actual benefits of doing this are hard to ascertain.

Taking multiple medicines involves increased risks.

Everyone with multiple illnesses should receive a holistic person-centred review of their medicines and share in the decision making of what they take. (My view takes this further. I’d say ‘be given the option to lead on the decision making of what they take’).

Polypharmacy (taking four or more medicines) can be divided into two categories. Appropriate polypharmacy, where the benefits and disadvantages have been fully evaluated together. Problematic polypharmacy, where this hasn’t been done and the benefits of the medicines are not realised, sometimes to the extent that they are making the person worse.

There are some useful tools which can be used to help evaluate appropriateness of medicines in individuals (described in the document). Additionally I’d add that motivational interviewing techniques and time to build trust of the patients are also vital.

Intentional non-adherence can be overcome in a trusting clinician patient relationship, which usually happens over time.

#jargonbuster ‘intentional non-adherence’ = not telling clinical staff what you are actually taking and/or not taking.

More on the NICE Key Therapeutics Document here:

Personal views of Steve Turner RGN; RMN; Ba (Hons); P.G. Dip Ed; MIHM

Steve is a nurse prescriber and NICE Medicines and Prescribing Programme Associate.

In part one of this two part blog I suggested that patients themselves need to take more responsibility for the medicines they are prescribed.

But what about vulnerable groups who may depend on decisions being made for them, and in their best interests?

Click on the image to enlarge it.

Key points:

Facts:

Most of the prescribing in this area is ‘off label’ ( #jargonbuster – that’s medicines prescribed for something that isn’t listed as an ‘indication’ for that medicine ).

This prescribing can include multiple psychotropic medicines, often medicines in the same class and without relevant indications. There is no evidence base for this type of prescribing.

( #jargonbuster – psychotropic medicines = The phrase “psychotropic drugs” is a technical term for psychiatric medicines that alter chemical levels in the brain which impact mood and behaviour.)

Psychotropic medicines in people with learning disabilities whose behaviour challenges are not always prescribed by a specialist in this area.

Actions to take:

A Holistic assessment.

Before prescribing it’s important to understand all triggers and environmental factors. Reasons for behaviour now and what has happened in the past.

Specialist initiation and review of prescribing.

Multi-Disciplinary team involvement.

Best interests decisions, regularly reviewed.

A tiered approach to prescribing – ‘start low, go slow’.

Involvement of Second Opinion Appointed Doctors (SOADs) to provide a statutory safeguard where consent is an issue.

‘SOADs visit the person and explore the current and proposed treatment, certifying what is considered to be appropriate and reasonable in circumstances where the person cannot or does not consent to it, discussing it with team members and the person before reaching their conclusions.’

Clear documentation:

Of the holistic assessment

Of patient involvement

Of carer and family involvement

Of multi-disciplinary team involvement

Of the rationale for prescribing / not prescribing

Review dates and evidence of reviews

Monitoring of the effect of the medicine(s) that includes as required ‘prn’ medicines (Charts can be useful)

Evidence of changes in response to the medicine(s) not being as expected, including if the medicines has no effect, and the actions taken on this.